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My husband is 72 and has been diagnosed with Lewy Body dementia. He is going on 9-10 years with first a memory problem but now has major behavioral issues. He is under Hospice palliative care. They have tried several different medications but nothing has helped so far. He just keeps getting worse. He is restless and always hiding, rearranging, or destroying things in the house. He relieves himself all over the house; just peed in my washing machine this afternoon. He will not take a shower or let me give him a bed bath. He's getting more abusive and not sleeping well. I'm trying to take care of him by myself but I'm getting worried that I won't be able to continue. Our local nursing homes won't take him because of his combativeness. We have two sons that are busy with their jobs and families. I am looking for a medication that will calm him down and give me some relief.

Sadly, no perfect drug exists for all patients with this disease. While one medication works wonders for one person, it may have the opposite affect on another person. It takes trial and error to find exactly which medication(s) works for your dad. Some people only need a little dose while others need massive dosages. My mom has her own cocktail of anxiety medications that work. When they’re no longer effective, I move on to try something different. I pray that God gives you patience as you try to help your dad.
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Reply to LoveLea
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ThreeStrikes: Imho, he should be seen by a geriatric physician.
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Reply to Llamalover47
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Find yourself an old fashioned Dr and get him to prescribe for your husband. There are drugs a modern Doctor will not use because they have been superceded by drugs that are less sedating. But sometimes going back to older options can be more suitable for someone than the latest invention, but one needs an older Doctor for him/her to have these things on their radar.
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Reply to TaylorUK
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Is your husband taking donepezil? My father has LBD and was becoming extremely combative. The medications weren't helping until the doctor prescribed donepezil. The difference in his behavior was amazing. His behavior quickly changed and he is now no longer combative.
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Reply to Krisann
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I don't know where you live but if you have access to medical cannabis it should be considered. My mother was very combative and scaring her home health care. I started mom on capsules after trying sublingual, gummies, etc. She now takes them 3 times a day. Care by Design is our favorite brand but there are others. She takes a 4:1 (cbd:thc) morning and afternoon and 1:1 at bedtime. We've had no violence or anger. She still sees things and has active fantasy world but giggles instead of hitting us.
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Reply to luaneZ
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Whatever you do get him off of the Haldol and Ativan immediately! The two alone are harmful enough, but the combination of the antipsychotic and benzodiazepine is exceptionally dangerous. And likely the cause of the increase in aggressive/combative behavior, although hospice will tell you that it is not.
I, also, would suggest researching and trying melatonin. It has many beneficial qualities. Personally, I would get him off of hospice completely. Are the limited services, besides the drugs, really adding any benefit? As someone said earlier, there is a difference in palliative care and hospice. I absolutely would NOT send him to hospice in-patient. He won't last long there. Their answer, as it has been thus far, will be to add additional/quantities drugs. You stated you are familiar with the side effects and Black Box Warnings for the drugs they are giving him. Please heed these warnings. They have been put there for this exact reason.
Please seek out care from another physician, preferably a geriatrician. You have your husband's best interests at heart. It doesn't appear that the ones treating him at this time have that same level of interest. Many prayers for you and your husband.
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Reply to elderadvocate20
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I’m now a fan of SEROQUEL (Quetiapine). Dad is headed for week two now and what a difference (sleeping at night and no more running us crazy about home during the day (trying to escape). Hospice would not prescribe Seroquel no matter how we asked. Hospice prescribed haldol (made his anxiety/not sleeping issues worse and he could not help himself the next day), Hospice prescribed lorazepam (made his anxiety/not sleeping issues worse and he could not help himself the next day). Hospice prescribed amitriptyline, (got too much sleep and could not help himself). Hospice prescribed good old trazadone (you would have thought we were in a zoo – he went even crazier on that one and almost ran us out of our own home).

Hospice helped us get dad admitted to the behavioral unit where he got over prescribed a bunch of meds for memory (didn't keep him on) plus 100mg of Seroquel. The 100mg was causing too much sleep which lead to him not being able to help himself and that would lead to not wanting to eat because he would have not been able to stay awake.

So my primary helped us fine-tune and told us 50mg of Seroquel (melatonin optional) only at night and added citalopram for the morning regimen. So far/so good. Hoping all works out once placed in a nursing home. I'm still wrestling with the fact that he will have to go back to a nursing home instead of his home.

Don't give up either! Hoping you and your husband can find some peace as well!!!
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leguess Oct 14, 2021
My 88 year old father has dementia and Seroquel has helped him also to sleep at night and somewhat control his behavior.
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My dad was on Haldol. It gave him hallucinations and then death after a couple of months.
My husband is on Trazodone and melatonin. Works wonders. It calms him from agitation and helps him sleep all night.
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answry Oct 14, 2021
My sister allowed her favorite doctor to place dad on the highest dose of Haldol. I would see him with the shakes (not just hands but head) and stumbling when walking on his own. I pleaded with the doctor to take that away. He would not. I knew bad things were going to happen. Two falls later and dad has had problems with memory every since. Not saying falls don't happen. So when hospice wanted to try, I told them the lowest dose only and I still did not like what I saw.
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I don't know about medication but there must be something that can control these people as behavior like this cannot and will not be tolerated. Nursing homes must know what to do with these people. Keep looking. YOU CANNOT AND SHOULD NOT BEAR THE BURDEN OF WHAT HE IS DOING - IT WILL DESTROY YOU. This is an emergency and he must be placed at once.....this cannot continue no matter why or how.
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Reply to Riley2166
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Be sure to check the side affects of Seroquel or other anti anxiety drugs. They gave my husband Risperidone and the side affect is “sudden death”. I chose not to give it to him. It is sad but there really is no good anxiety med that doesn’t have scary side affects.. I give me husband tea called Tilo or Linden Leaves that is used for calming. I give it to him when I notice he is getting agitated and before evening sundowners sets in. I also leave the light on in his room at night so it is not so scary and dark. This all has helped a lot…
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Reply to LMarrero
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luaneZ Oct 14, 2021
Cannabis (indica) can be very effective for anxiety.
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Talk to his doctor - or a geriatric psychiatrist or neurologist - about the problems you are experiencing. The doctor can prescribe medications to calm anxiety/agitation and sedatives to help him rest at night. It appears you have reached a stage where your husband needs somebody with him around the clock while awake. It might be helpful to limit the areas he can access to a bedroom, a bathroom, and a small sitting room/dining room set up (probably in the bedroom). Though I hate the idea, you may have to keep other rooms inaccessible (with locks).
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Reply to Taarna
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I agree with Helen. SEROQUEL helped my mom with her mid to late state dementia. It helped with her mood and sundowners. She only takes a small amount 25 mg at night and a huge improvement. Doctors don’t tell you this so you have to ask for it Good luck. You are an angel. Karen
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Reply to Karenmcc
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If he has medicare I would find another doctor for him. There should be other doctors around you that would look into his care start calling don't give up. Tell them that he got worse after this drug was prescribed that he wasn't like that before. It maybe another hospital visit to change meds but it might be worth it.
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Reply to Babs2013
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SEROQUEL is the safest antipsychotic !
the 2nd generation antipsychotics like olazapine etc. Are dangerous for
LBD as they interact with dopamine
and cause very serious side effects in LBD rigidity even death !!!
consult a very good geriatric psychiatrist or neurologist… and
start with very low doses.
also melatonin night and Ativan only when needed.
unfortunately many doctors /professionals not clued in !!!
we have to learn hard way and this forum great source info !!!
also when behaviours more controlled try to find good memory care for him and visit every day !!
LBD is not a gentle dementia!!!
best luck
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Reply to Helenn
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My mom has advanced dementia-not LBD-but we’ve had luck with CBD/THC. Was also put on Haldol by hospice to horrific results and drove to a state where we could get medical grade cannabis and saw an immediate result. Then we obtained a medical marijuana card and we’re getting it locally. Big difference. We’re pretty much doing trial and error on our own but the Hospice drugs were so bad we were willing to take a chance. Just my experience. Best of luck to you and your family as you navigate.
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Reply to Jabnyc
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My mom did worse when any time meds were added..She actually went into a severe regressive period and lived in a locked Memory Care unit for 10 months. I requested we decrease all her meds in general, use old school meds, found a good MC Assisted Living facility and she has actually gotten better!! Incredibly better. Mom {87 yr old} says she needs a quiet room to go to, less conversation, peaceful surroundings at all times and a very fixed daily schedule. Any schedule changes and her Lewy acts up. Even a MD visit can throw her off. We stay on a schedule even for our visiting and days we take her out of her facility {Sundays church and my apartment for lunch} . The brain challenging activities at AL have helped greatly..Many days she is quite normal. She can play games, read , write letters and do her own showers again. I have read and moms doctor said all psych drugs are contraindicated in Lewy. I realize the above info may not be for your loved one but others with Lewy may find it helpful. So sorry for your struggles…
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Reply to Sadinroanokeva
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Haldol might be part of hospice's toolkit but it is contraindicated for LBD, I knew a person with LBD who died after being prescribed it (this wasn't just a coincidence, the psychiatrist freely admitted that the drug was the cause of his death).
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Reply to cwillie
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https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/diagnosis-treatment/drc-20352030

Call the hospice nurse and tell them that he needs to be taken OFF Haldol.

Yes, he may NEED to be doped up, but not with Haldol.
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Reply to BarbBrooklyn
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Haldol is one of the medications that Hospice has him on. He spent 16 days in a psychiatric hospital in June of this year. They said they would assess him and get him on the right medication. All they did was dope him up every time he misbehaved. He was in a strange place with no one he knew. They certainly were not compassionate. He couldn't walk, wouldn't talk or eat, and had pneumonia when he came home. The psychiatrist called me several times and told me that I could not care for him by myself. I currently have no choice.
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Reply to ThreeStrikes
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Clairesmum Oct 14, 2021
Cared for some patients with LBD as a hospice nurse. Haldol is not used with LBD patients as the likelihood of a paradoxical reaction (severe agitation) is very high. He needs a skilled geriatrician or neurologist who has experience with LBD and knows how to adjust meds very slowly.
You can transfer his hospice benefit to a different hospice, you know.They are not all the same, for sure.
I would guess the goal for you might be to get him on meds that manage behavior somewhat, and then into a nursing home.
LBD is very very hard to live with, as well as to treat medically. My heart goes out to you.
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Is he on Hospice or is he on Palliative Care?
Big difference with the services that they can provide.
If he is on Palliative seeing a specialist that can get him on the correct medication, the correct dose would be great.
If he is on Hospice they can admit him to the In Patient Unit for Symptom Management.
If he is on Hospice the CNA should be the one giving him baths or showers.

If he is on Palliative Care I would talk to them about switching to Hospice. And Hospice staff can work magic getting someone into a facility if that is what is necessary. Once symptoms are managed it will be easier.

LBD can be very tricky there are medications that are typically given for anxiety and combativeness that can not / should not be given to someone with LBD as they can be fatal.
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ThreeStrikes Oct 11, 2021
He is on Hospice palliative care only. He most certainly would not allow a CNA to bathe him.
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I echo Ricky's recommendation to see a geriatric psychiatrist.

There are certain meds (I think it's Haldol) that should never be given to a LBD patient.
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ThreeStrikes Oct 11, 2021
I'm sorry, I'm just learning how to use the forum. He was in a psychiatric hospital for 16 days in June. They didn't help, actually made things worse. Hospice has him on Haldol and others medications at this time. His behavior has gotten worse.
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Have you seen a geriatric psychiatrist for your husband?
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Reply to Ricky6
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ThreeStrikes Oct 11, 2021
He was in a psychiatric hospital for 16 days in June. Doped him up and sent him home in worse shape than before.
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